Becoming an Advocate

Quite possibly one of the hardest things for me to swallow through our first year of becoming parents to deaf children was the average civilian’s lack of knowledge. Though I’d worn those very same shoes for 26 years prior to having my first child, I quickly forgot my own condition, which was weighted with the same ignorance. I immediately began my habilitation as soon as I left the hospital to care for my first child with multiple needs. At first, I admittedly, was quite offended and scared that the entire community wasn’t already prepared for my child. It only took me over-hearing people whisper a time or two, or seeing parents redirecting their children who may have taken a second glance at my child’s hearing device and scared their child may ask a question that would offend us, or worse, that they couldn’t answer, for me to decide, I had work to do. My children were just as much fun, and had just as much ‘kid’ in them as everyone else, and if I wanted my environment prepared enough to enjoy my kids, and not just see them as existing, I needed to move from angry to advocacy. I never wanted another child (or adult for that matter) to walk away from a playground, or a grocery store, or a restaurant, wanting to know what they were wearing on their heads, and not give them that answer.

I began by answering their facial expressions. If I saw someone taking a second look or seem puzzled as they sort through the files in their brain to see if anything they have stored will do as for a label for the equipment seen before them, I'd just speak up and tell them what they were looking at. After I gained confidence with speaking to people about the kids' devices, and saw the interest that others seemed to share, I took a step back and waited for those questions to come in verbal form rather than answering them before they were really there. I wanted to give people a chance to also become comfortable with us, even in a check out line, so my children and I make usual conversation (or sometimes unusual depending on which child starts it) first, without overloading them with information they didn't ask for. If they became comfortable with us as “people” first, then they are more likely to ask their questions should they have any. Even early on, I’ve been pretty adamant about the kids answering questions for themselves. I was more than happy to help clarify any misunderstood speech but I wanted my kids to try and answer questions directed toward them. After all, all that time working on speech and language and what better way to practice but with real time conversations. Now they’ve both turned into their own little advocates by talking to their classmates about what it’s like hearing with cochlear implants, confidently asking for their own repeats if needed, and informing those who begin conversations with them at the beach or pool when they aren’t wearing the processors, that they are deaf and can’t hear without their cochlear implants. My next step would be to have them write their own letters to our state legislators about the state’s poor Medicaid reimbursement for cochlear implant surgery. I’ve already written mine and had all my family and friends help but until I read this story from Lydia, it never crossed my mind to let them write their own. Here’s her story:

Jeremy's Teacher of the Deaf had all the kids she works with in our town (about 5 of them) write letters to our US Representative in Congress in support of captioning for electronic media legislation. So isn't that cool that she's teaching them how to advocate beyond just their classroom? Here's the letter she sent parents (The group, Hearing Loss Buddies meets twice a year and includes the 5 kids who go to 3 different elementary schools. There is one 2nd grader, two 4th graders and two 5th graders in the group):

Hi Parents, During this year, I have been researching information regarding federal legislation to mandate closed captions for web-based media. I learned that in the last Congressional session (110th), Representative Markey (Massachusetts) introduced a bill toward mandating CC for web-based media. No action was taken and the bill effectively died.

Working with the students during Hearing Loss Buddies, they wrote letters to Representative Tsongas explaining why closed-captions were needed. I hope they showed you their letters. As well, I wrote letters to Representatives Tsongas and Markey. I am letting you know about this as you may want to do the same and write a letter. There is no current legislation introduced and these letters urge them to reintroduce the legislation.

Bill Information:
The Subcommittee on Communications, Technology and the Internet is the Congressional committee responsible for this issue. “Rick B” is the Subcommittee chair.The bill introduced during the last session was H.R. 6320, "Twenty-first Century Communications and Video Accessibility Act of 2008." The legislation incorporates the inclusion of closed-captioning of video programming carried over the Internet, as well as expanding the scope of devices that must display closed captions....

Isn’t that a fabulous way to broaden the children's own advocacy skills? That story leads me to a great little poem which Naomi contributed as one of her favorites and I found quite fitting.

IT MATTERS by Anonymous

As I walked along the seashore,
This young boy greeted me.
He was tossing stranded starfish
Back to the deep blue sea.
I said, "Tell me why you bother.
Why waste your time this way?
There's a million stranded starfish.
Does it matter, anyway?"

And he said, "It matters to this one.
It deserves a chance to grow.
It matters to this one.
I can't save them all, I know.
But it matters to this one
I'll return it to the sea.
It matters to this one
And it matters to me."

I walked into the classroom.
The teacher greeted me.
She was helping Johnny study.
He was struggling I could see.
I said, "Tell me why you bother.
Why waste your time this way?
Johnny's only one of millions,
Does it matter, anyway?"

And she said, "It matters to this one.
He deserves a chance to grow.
It matters to this one.
I can't save them all, I know.
But it matters to this one.
I'll help him be what he can be.
It matters to this one
And it matters to me."

I walked through the capitol.
Some parents greeted me.
They were helping legislators
Remember children in all they do and see.
I said, "Tell me why you bother.
Why waste your time this way?
Your issue is one in millions.
Does it matter anyway?"

And they said, "It matters with this one.
Children deserve a chance to grow.
It matters with this one.
There are other causes, we know.
But it matters with this one.
We must help children be all they can be.
Because it matters to everyone
What our future turns out to be.

For some of us, it's not easy becoming an advocate. It takes hearing your own voice before you gain enough confidence to let others hear it as well. We all become advocates in our own ways, whether you're walking into the classroom and talking to the teacher about your child, or walking in and meeting with your state legislatures, you will improve not only your advocacy skills, but your community as well.

Written by Val, mom to Gage (8) and Brook (5), both are bilateral cochlear implant recipients